When members of an autism support group saw that the Ombudsman for Children’s Office was advertising a free family event in Dublin in November, they thought it would make an enjoyable Saturday outing.
But the OCO Universal Children’s Day Event didn’t quite live up to its inclusive-sounding title. On checking in advance that it was going to be autism-friendly, Wicklow Triple A Alliance was disappointed to be told it wasn’t.
“I kind of assumed it would be,” says one member of the group, who has a seven-year-old son with an autism spectrum disorder (ASD).
It’s not difficult to make autism-friendly arrangements, she explains – such as having a quiet room, putting up photographs and descriptive text online to help parents show children what to expect, and, perhaps, allowing them in early so they get a chance to settle before the crowds arrive.
This Greystones mother was annoyed they were told nothing could be done about the event in Wolfe Tone Square this year, but, on the positive side, the OCO told her they would work on it for next year.
In response to a query from The Irish Times, the Ombudsman for Children's Office (OCO) said that as part of the celebrations of Universal Children's Day in November, it organised an open-air concert featuring the National Children's Choir and Ma Samba Youth Band, to which all children of every background and ability were welcome.
“However, it was not possible on this occasion to make specific provisions for children with autism. Providing a quiet room and autism-friendly atmosphere is something we will include as part of our Disability Summit, which will take place in 2018, and as part of next year’s Universal Children’s Day event.”
Greater understanding about what can be done to make activities and venues more autism friendly is slowly seeping into mainstream events and businesses. It may require physical adaptations and restricted sessions, but also a change of attitudes, through increased awareness and staff training.
Parents of children with ASD are used to judgmental looks when their child is having a meltdown in public, but they could still do without the smug assumptions. It would be even better if, with a little more consideration and planning by others, that meltdown could be avoided in the first place.
Some 300,000 people in Ireland wake up every morning knowing that autism will be part of their day, says Niall Murphy, acting head of operations at Autism Ireland (which is in the process of changing its name from Irish Autism Action). That figure is based on at least 1 per cent of the population having ASD, plus those who live with them.
More businesses and institutions are beginning to take the needs of this constituency on board and trying to make their life a little easier.
For instance, in this the season of pantomimes, The Helix in Dublin has led the way. For its "sensory-friendly" performance of "The Beauty and the Beast on Tuesday, December 19th, the auditorium lights will stay on, the cast will hold back on their louder shrieks and nobody will bat an eyelid at a child or three rolling in the aisles.
"It is a show we look forward to every year," says Claire Tighe, producer of the Helix panto and chief executive of TheatreWorkX Productions, who came up with the idea six years ago. The first time she made the adaptations she was just hoping they had got it right, but was reassured by the feedback, including one family who told her how they could never have done an outing together like that before, having one child with ASD and one without.
The technical changes required are not huge and what’s probably most important, Tighe adds, is that these families feel completely welcome.
Others following suit include University Concert Hall Limerick, which has a sensory friendly matinee of its pantomime Cinderella, on January 5th and the Ark in Dublin organised three "relaxed" performances of its Christmas show Tracks in the Snow, the final of these being on December 17th.
Even Santa is playing his part with, for example, a sensory day in his workshop at Aillwee Cave in Co Clare on December 21st and he did something similar in Airfield last weekend (Dec. 9th).
Supermarket shopping is an all-year-round challenge for those with sensory issues and several chains now have designated autism-friendly times.
SuperValu, which has 40 of its 219 shops already doing this, recently announced that these will be extended to more stores, along with initiatives that it has developed in conjunction with the Middletown Centre for Autism in Co Armagh. These include store maps, "de-sensitisation" of store sounds at designated times, reduced beep sounds on tills and staff awareness training.
There will also be wider use of autism-friendly trolleys that can be fitted with visual schedules, designed by Cork parents Tony and Theresa O’Donovan, who have a son with ASD, and which were first used in Clonakilty’s SuperValu.
Meanwhile, Lidl Ireland is piloting autism-friendly quiet evenings in three stores – in Dublin, Monaghan and Mullingar – where, every Tuesday between 6pm and 8pm, there is subdued lighting, no in-store announcements or music, priority queueing for people and families dealing with autism, and extra assistance on request.
The impetus for something similar at Tesco in Balbriggan's Millfield Shopping Centre, Co Dublin, came through an approach from a local support group, Friends of Autism/ADHD. There is now a "quiet hour" between 6pm and 8pm every Thursday, when the tannoys and the TVs in the electrical department are switched off, extra staff on hand and they don't move into aisles with rumbling trolleys to replace or remove stock.
Cathy Gaffney who has a daughter with ASD and was involved in the setting up of Friends of Autism/ADHD about 10 years ago, says there is definitely a growing understanding of the difficulties of families like hers and how catering for them can benefit the businesses themselves.
“People can’t just go in and shop if the child or an adult is having a meltdown,” she points out. At the designated evenings in Tesco it’s great, she says, “because you know there are not people going to be staring at you”.
She also singles out Funderland in the RDS for praise, as there is always a sensory friendly session to which she can bring her daughter because the machines are slowed down, the lights dimmed and crowds reduced.
At such an event, parents with an ASD child could be queuing up for 10 or 20 minutes and then when it’s their turn, it’s the wrong coloured chair. A child might not sit on an orange chair and “you’d be mortified”, she says – but here staff understand and tell them they don’t have to use that chair.
“It’s those little things that really make a big difference,” she adds.
No music was played, there were no hand dryers operating and a "social story" was posted online to help parents prepare children for what would happen every step of the way, from arriving at the park, to getting on and off the rides.
Another theme park, Tayto Park in Ashbourne, Co Meath, held its first Autism Awareness Day in November and says it is looking at doing another event next April/May.
Autism Ireland helped train staff ahead of the day, says Murphy, who was delighted to be able to bring his own 17-year-old son, who has severe autism and intellectual disability, to the park for the first time.
No music was played, there were no hand dryers operating and a “social story” was posted online to help parents prepare children for what would happen every step of the way, from arriving at the park, to getting on and off the rides.
"One thing children with ASD have in common is that they all wake up with anxiety," says writer Sarah Webb, who has a son with ASD. She has started lobbying, along with a number of children's book organisations, to make all book festivals have at least one event for children on the spectrum by 2019.
As children's curator for several years at the Mountains to the Sea book festival in Dún Laoghaire, Co Dublin, Webb organised autism-friendly workshops and events. While "relaxed" events are ideal for some, children with more complex needs do better in individual workshops.
Now recently appointed as family and children's programmer for the International Literature Festival Dublin 2018, she intends to do something similar at that event next May.
“There is a lot of preparation of work involved to make the experience a happy one,” she explains. “Thought has to be put into the venue – some might have mobility problems. It has to be a calm and non-stressful environment. You need extra staffing – extra volunteers.”
She would work with an artist to come up with a social story for the event, that could be put up on a website and/or emailed to participants.
As well as the preparation being important “so is the message going out that these are not just add-on events, but an integral part of the festival and that families are welcome with open arms, rather than just tolerated”, she says.
Webb acknowledges that autism-friendly sessions are “slowly getting traction” in areas of the arts, such as theatre and cinema, “but it would be nice to see it just as a matter of fact, rather than something we have to discuss”.
Part of the problem, as she points out, is that there is no Government organisation for autism and it is left to voluntary groups to lobby for change and raise awareness. One of these, AsIAm, produced a series of AsYouCan industry-specific guidebooks that are a good starting point for any business.
However, the greatest advocates for change, as AsIAm founder Adam Harris has pointed out, are local support groups. Mostly set up by affected families within the last decade to provide support and specialised activities, they are gathering momentum in pushing the wider community to be more inclusive.
But Murphy of Autism Ireland also wishes that the State would get behind a campaign for more autism-friendly services in, for example, hospitals and doctors’ and dental surgeries.
These services were also highlighted when members of Prism, a peer-led support group in Dún Laoghaire-Rathdown, were canvassed for this article about where they would like to see improvements.
“GPs have a very poor reputation in terms of understanding and making adequate accommodations for children with ASD,” says one member. Another calls for better training and awareness of ASD among staff in the health and education services, where buildings, waiting areas, classrooms etc need to be more sensory friendly
“It would be nice to see banks, post offices and credit unions offering supported ASD opening hours,” adds another.
However, credit must go to organisations, services and companies who are already making the effort to be more caring towards the ASD community.
A FEW MORE EXAMPLES
Shannon Airport became the first in Europe earlier this year to open a sensory room off its departures lounge for children and adults with neurodevelopmental challenges, including autism. The room has features such as an aquatic bubble tube, an undulated wavy wall, colour changing LEDs and wheel projector.
There are also “social story” videos on its website showing what to expect when passing through the airport and it can offer pre-arranged tours to familiarise people before a flight. People with special needs can apply for bright orange baseball caps and wristbands so they are clearly identifiable to staff as possibly needing extra assistance.
Dublin Airport will also issue a wristband or necklace identifier to those with a confirmed diagnosis of autism and who are booked to fly. There are visual guides to both terminals on dublinairport.com, as well as advice for carers.
Aer Lingus has online visual guides to what to expect pre-flight, in-flight and post-flight and it welcomes any family or companion travelling with someone with ASD to contact them on firstname.lastname@example.org.
Many of the country's cinemas host sensory-friendly screenings once a month on Sunday mornings, including all the Omniplex outlets, some in the Odeon chain, Cineworld and IMC. There are no trailers or advertisements, lights are kept on low, the sound is turned down and allowances are made for restless audience members.
Cork City Libraries is a leader within the public library service in catering for those with ASD. Its first initiative was the introduction last year of private, sensory-friendly visits by appointment to Hollyhill Library at times when it's closed otherwise to the public. Then senior executive librarian Ann Riordan produced a "social story" to put on its website to prepare children with autism or anxiety disorders for a visit, which has proved helpful to a broad range of library users.
Now Grand Parade Library is piloting a sensory storytime programme with a trained facilitator, aimed at small groups of children aged two to five. The first half begins before the library opens, so participants have a chance to settle before other visitors arrive. A pilot is also planned for Tory Top Library.
Newcastle, Co Down, decided earlier this year to try to become the North's first autistic-friendly town. It's a venture inspired by Autism Initiatives (AI), which has a number of services in the town and employs more than 90 staff there.
Informally, they have always found the seaside town (population 7,500) to be very welcoming to its service users, says AI’s national director Grainne Close. Now, in partnership with Newry, Mourne and Down District Council, they are looking to formalise it as an autism-friendly destination.
While aiming to get at least 20 per cent of the town’s 200-plus businesses signed up and trained by next June, some, such as restaurants and an amusement arcade, already have sensory-friendly times.
“We don’t want to create a separate space – we want to make the space inclusive for everyone,” Close says. “We find it is a mindset that is going to do that and also equipping people with skills to be able to manage behaviour.
“I don’t want this just to be a tick-box exercise,” she adds. “We want that when families come, they feel there is something different here.”
Dublin City University is working towards becoming Ireland's first autism friendly campus through a collaboration with AsIAm and Specialisterne Ireland – a specialist consultancy that recruits and supports people with autism.
Dublin Zoo/Fota Island
Dublin Zoo gives free entry to a carer visiting with a child with special needs and, while autism assistance dogs are not allowed in the main area, there is a designated area to accommodate the animals during their owners' visit.
After a controversy over some families not having autism identification cards accepted, Fota Island in Co Cork last August introduced a 50 per cent discount on the entry ticket for any child or adult with special needs. The accompanying carer receives free entry on presentation of a valid carer's card.